Friday, November 18, 2011

Events & Adventures

4 hours

600 people

1.5 million dollars

all for Cystic Fibrosis research.

What a great adieu to the last CF event of the year…leave on a high note and a fist full of cash for the cure. I'll leave the event with hope for the future, a couple of roses, and a York Peppermint Pattie.

Over a million reasons to be elated
Over a dozen CF events behind me
and only three very painful dates to now endure

I take a deep breath in and sigh as I think of what’s ahead of me. I take a Peppermint Pattie off the table, and grab Marc’s hand as we walk out Cipriani’s doors down 42nd Street, toward our hotel.

Marc and I recap the success of evening as we stroll hand in hand in the brisk night air. I just love the vibe of New York City…all the energy, the unexpected, the excitement that defines NYC. We are here so often that we don’t even bother to read the street signs anymore; we just walk…engrossed in our chat about CF, what we plan to do about the unpleasant upcoming events, and ponder if we should stop at the great wine bar we like on 44th before we call it a night.

Together we seemed to have figured out how to get through in life what most people can’t understand. Perhaps it’s as easy as just taking that one step at a time, hand in hand, where the streets have no names. Okay maybe that last part is borrowed from Bono...

My point?

Life is hard.

Hearts get broken.

Some things are truly out of our control.

All the more reason to control how you handle it.

3 dates left to handle:
Thanksgiving
December 4th
Christmas

They have been absolute hell for us since Jena “moved up” in 2006.

One was her last holiday with us
One date I will despise forever
One celebration that's lost it's magic

We keep trying to find new ways to breathe through them. Each year we try to make them bearable. We keep trying.

Last year we believe we found the answer. Marc & I decided to change things up a bit. We cancelled Thanksgiving, renamed it “Just Thursday” and escaped on a 10-day adventure to nowhere and didn't return home until December 5th…oh, and we took ALL our Facebook friends along for the ride. We asked, "North on 95? or West on 80?" We let our Facebook friends decide "Chattanooga or Memphis?" "Hurricane or Margarita?"

Our impromptu trip turned in to a communal escape from reality...with nothing but a suitcase, a smartphone and a sense of adventure.

Well, after our walk down the streets of NYC it inspired us to do it again. We are setting out Wednesday night for another adventure to nowhere...

3 comments:

OWNING your LIFE, for all that it is. Moving through and LIVING despite the pain. I KNOW where you and Mark learned to do that! Just by being, Jena taught that lesson. Anyone who paid attention to Jena, or to her story told through you,has a richer life because of it. I have told you before how THANKFUL I am that our daughters were friends. I am equally THANKFUL you and I are friends. At the GALA last May, I met some more wonderful people who also live life, "Jena Style", because of your gift of sharing. I am looking forward to reading about your upcoming adventures. I can't think of a more perfect "Just Thursday" gift, living Jena-style and sharing it here ! Because of Jena, you, Mark, and Eric... Bono isn't the only one thinking ,"Its a Beautiful Day" . Let's get together when you return. Would like to share some smiles in between those 'dates'. Much love ~ Margie

My eyes just filled up...but tomorrow I will have so much to be thankful for...I'm so thankful that you have come into our lives this year...You and Marc are an inspiration to Mark and I, we hope to grow our relationship with you both over the next year...where ever Jena leads you on this trip I hope you have the most wonderful time <3 love to you both...Heather &Mark

Buy the book:

Beyond Breathing is the story of a mother’s loss of her 13 year old daughter, Jena, to Cystic Fibrosis, a fatal genetic disease. The journey takes you from unfathomable heartache to love and understanding of life’s realities.

Through the pages, we understand that life lessons come from the children, beauty of living, and the power of love.

In the span of one year, Margarete learned to go from depression and dependency to inner strength and the realization that love never ends and that there are no coincidences. She now knows that sometimes the most important thing you can do is to just be there and that breathing isn’t always easy.

Margarete hopes to reach a place in her life where she is beyond just breathing.